Re: IDSA Guidelines...can anyone tell me what this means?


McSweegan is a good guy wrote:

I think the basic problem is with the serologic testing.

Oh, yeah...but I think the limitations of that are fairly
well-documented, as well as the inter-lab difficulties, the
discrepancies from lab to lab. That's why I am having such a hard time
believing this is actually what is intended here.

But...if you can analogize to a game of Lyme poker...then an ELISA
beats clinical observation...and a Western blot beats an ELISA...so you
are really left with diagnosis via a western blot...which is exactly
what they say they don't want. And if you are saying that we don't
treat without a positive serology...then that is a serodiagnosis, pure
and simple.

Logically, I would think the responsible, knowledgeable physician has
to weigh all these things...look at the entire clinical picture and
decide how much weight to give each...along with the patient history of
exposure.

You've also got to take into consideration how many times you get the
same results...and really check out differentials...things that could
cause "false positives".

But what I want to know...is if you've got a patient...known
tickbite...symptoms consistent...positive ELISA..."negative western
blot"...and you have run a VDRL and you can't find anything that should
be causing the false positive...do you treat? Do these guidelines
actually suggest not to?

???

While IDSA may
not mean to state exactly that...

I honestly don't know what is meant here...and although I am not a
physician, I would guess that, alone presents something of a problem.

the average physician is going to
interpret that as meaning in late stage illness, you have to have a
CDC+ test.

Yes, I would think so.

"I think that's what the LDA is unhappy with".

I don't know. If you read the disclaimer language, I don't see how they
can insist that individual physician discretion has been removed.

These are guidelines...I am not at all sure the LDA's reading is
correct in insisting that "discretion" has been removed.

We all know that not all late stage cases are going to be CDC+.

Yeah.

playing the devil's advocate and trying to see things from the steere
perspective, let's take the case of a late stage patient who either
actively progressed to late stage disease without getting an EM-based
diagnosis, or reactivated a latent infection {a poorly understood
process to say the least}. now, let's suppose that at some point in
time prior to presenting for lyme diagnosis, this patient developed a
respiratory infection or an ear infection or something like that and
was given a ten day doxy script, or a 2 week erythromicin script, etc.
now, according to even steere, that sort of thing can cause CDC- lyme
serology, active seronegative disease. and given the very high
prevalence of antibiotic use everywhere in the US, this is a situation
which cannot be too infrequent.

Hell, you can get a "positive" blot in one lab...and not another. From
the same damn sample.

that's just an example.

here's a question I have, and I apologize for not presenting the exact
quote. somewhere in the new IDSA guidelines, they discuss re-treatment
of late disease. and they state something like "re-treatment should
only be considered when objective clinical evidence of active disease
is obtained". however, the guidelines DON'T specifiy exactly what is
considered to be clinical evidence of continuing active disease. ie,
are they asking for positive lyme serology? a positive PCR? what about
a seronegative patient {since there has already been abx treatment,
according to steere seronegative disease can then proceed} who develops
some sort of nerve disease as evidence by EMG testing, or ...CNS
disease, negative serology, but a slightly elevated protein in the CSF,
a positive SPECT, and lesions on the MRI? is that enough?

I noticed that also...and there was, I think, a similar passage
relating to neuro...let me see if I can find it and get back to you on
that...

See, this is why they need to go into more detail on this stuff. there
has been very good work done by steere and wormser and such on early
lyme disease, but the problem comes with late stage disease,
seronegative manifestations, possible auto-immune syndromes caused by
Bb but not requiring its continual activity, complicated CNS disease,
peripheral nerve disorders, etc. and I think the bottom line is, they
don't really know themselves what the answers to these questions are. I
wish they'd just admit that. probably behind closed doors they do admit
that.

They did, however mention that there were no reliable evidence-based
studies in relation to cardio-stuff. Noticed that.

Yes, though...acknowledging what they do NOT know is sometimes very
important, I would think, if you are my poor GP trying to figure this
out.

I guess they can't be open about this because of the panic factor,
possibly combined with an ego factor. in any event there is some point
especially in a late stage patient who has had decent past evidence of
disease where the IDSA types need to lay off and let the patient make
his or her own decision regarding treatment. that's what is done by
medicine in other poorly understood or difficult to treat diseases such
as glioblastoma multiforme, ALS, pancreatic cancer, advanced lung
cancer, treatment-resistant TB, etc.

IDSA claims late stage "indolent forms" are "rare", but when dealing
with the most common vector-borne disease in the nation, the word
"rare" actually means THOUSANDS PER YEAR. and suddenly that doesn't
seem so rare, especially when you consider that there are only ~2,000
syphilis cases {all stages} reported every year in the US.

IDSA and EIS and CDC makes me feel like I'm a cow in a herd, and that
may be convenient for epidemiologists, but it's not american. the 14th
amendment guarantees equal treatment for all under the law, but when
people start playing god with you, they are violating this and other
basic tenets of the constitution and the american experience. the
children, friends, and family members of the IDSA members who make
policy, who speak out of both sides of their mouths, are among the
possible beneficiaries of a double standard at the expense of the
general public. they are possibly being told to avoid ticks and
exposure in endemic areas at all costs, while simultaneously the public
is told that lyme disease is "no big deal".

In general sentiment, I agree, (I think)...as I mentioned in another
post, what has troubled me about this, and still does, is my suspicion
that my care and treatment may being compromised by some unstated
policy decisions made by a very few people outside of an open process.

.

Loading